ALS Ice Bucket Challenge Progress
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Download the PDF version here.

The Golden West Chapter of The ALS Association helped secure resources and support for ALS research and care through our advocacy efforts, made possible by your generosity. Our ALS advocates, who represent 31 counties in California and the state of Hawaii, are essential at the federal, state and local levels to advance public policy initiatives aligned with our mission.


 

Spearheaded the effort to pass the bipartisan ALS Disability Insurance Access Act to waive the five-month waiting period for people with ALS to start receiving their Social Security Disability Insurance (SSDI) benefits. As of December 2020, the bill has passed both the Senate and the House of Representatives.

Initiated and led the campaign to double annual ALS Research Program (ALSRP) funding from $20 to $40 million awarded by the Department of Defense (DOD). Studies funded by the DOD, as well as the VA and NIH, have found that people who serve in the military are up to twice as likely to develop ALS as civilians regardless of which branch, era of service, or whether they served during war or peace time.

Engaged bipartisan congressional champions to introduce the SMART (Safeguarding Medicare Access to Respiratory Therapy) Act to ensure Medicare beneficiaries with ALS can access noninvasive ventilators (NIV) by removing NIV from the competitive bidding process.

ALS advocates worked to preserve and increase federal resources for ALS research, including $10 million in continued funding for the National ALS Registry/Biorepository at the Centers for Disease Control and Prevention (CDC) to identify genetic and environmental factors for ALS, provide support to researchers, and promote access to clinical trials.

 

Joined with other leading patient organizations to advocate with Congress to provide at least $44.7 billion in 2020 for the National Institutes of Health (NIH), a $3 billion increase over 2019, to increase investments in ALS research.

Partnered with many health care advocacy groups in the fight to preserve protections for pre-existing conditions for people with ALS under all insurance plans, including Medicare, Medicaid, and private insurance. Continued to play a key role in ensuring people with ALS have access to wheelchairs, speech-generating devices, and other complex technology through legislative and regulatory pressure.

The Golden West Chapter fueled the passage of Proposition 14 the Californians for Stem Cell Research, Treatments and Cures Initiative of 2020 along with a coalition of families facing ALS, Nobel Prize winners, medical professionals, scientists, more than 80 patient advocacy groups, and over 200 health care organizations. Prop 14 authorizes $5.5 billion for stem cell research and the development of treatments, with $1.5 billion dedicated for diseases of the brain and central nervous system.

Achieved a 300% increase in Golden West Chapter-sponsored attendees who participated in the 2020 National Virtual ALS Advocacy Conference, including people living with ALS and their families, who met with congressional representatives to share their powerful stories.